Peta sits down with Annabelle Moult, who shares her remarkable journey navigating medical and hospital trauma after being diagnosed with Neuromyelitis Optica (NMO).
Annabelle's story of resilience and recovery offers a poignant look at overcoming adversity and finding hope amidst life-altering challenges.
Connect with Annabelle:
Website: https://annabellemoult.com/
Instagram: https://www.instagram.com/annabellemoult/
Facebook: https://www.facebook.com/belleswheels
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode transcript:
Peta [00:00:03] Hello and welcome to the I Can't Stand Podcast, the podcast answering your questions about what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week I have Annabel Moult. Annabel's story is truly remarkable. Her life changed seemingly overnight. She's been through some dark times and really needed to pull out her own internal resilience. The strategies she's employed, I found to be really interesting, and I hope you enjoy. And I'm really glad that you're here to listen to Annabelle's story. So without any further ado, let's get into it.
Annabelle [00:01:02] Hi, my name is Annabelle. I live in the UK and in 2007 I fell ill with a rare illness called Neuromodulators Optica, which is an auto immune disease that affects the nerves and breaks down the myelin sheath. So the communication up and down the line doesn't happen. This left me paralysed from T5, meaning I'm in a wheelchair and initially it left me completely blind, whereas now I'm registered severely visually impaired. So I've been living for the past 17 years with with my disability.
Peta [00:01:41] It's such a pleasure to have you here, Annabelle. Thank you for joining me. It's always interesting how people introduce themselves. Sometimes I have people on the podcast and they don't mention their disability at all. But, I love and out front person, and, like, that's what we're here to talk about, right? What life is like with the disability. So you mentioned that you have a rare condition that, caused your disability, but you noticed it after a hangover. Did that happen before or after in my research? All. It just kept coming up. Hang over it. I'm like, oh, my goodness, I've had a bad hangover. That. Yeah. Could you please explain?
Annabelle [00:02:22] It is hysterical that. So everybody kind of takes that on. But what happened? I've gone out on the Friday night. I had a really good night with my friends, you know? So you know how it goes. Really? Of course. And then on the Saturday morning, I wake up with the most outrageous headache. I thought, oh, God. And then the Sunday morning, I woke up and I was like, this headache still hasn't gone away, and my eyes are blurry. My vision is going, this. This isn't right. Few hours later, I started to get tingling in my legs, and so we went to the hospital. But it was the on call doctor at the hospital rather than the hospital itself. And he said, well, I see that you've got a doctor's appointment tomorrow. Come back then get blood test. You're probably anaemic. So I went home and all I could do to ease the pain was get in and out the bath. Scalding hot baths to ease the pain in my legs. And then throughout the evening, headache got worse and got worse. Got up in the night. Collapsed, threw up. Called my partner Danny and said, we need to. We need to go to hospital, I can't walk. And I then was there for the next swell. I was there for a few weeks, then moved to a hospital in Oxford, but I was in hospital for about six months.
Peta [00:03:54] My goodness. And did you have any symptoms before that? No, no.
Annabelle [00:04:00] No. And so they didn't actually diagnose me for a couple of years because they just didn't know what was going on. Normally with neuro Microsoft, what happens is you get telltale signs things can happen for a few years beforehand. Headaches, tingling, loss of balance. And there was there was nothing. It was such a quick onslaught, and therefore, they just didn't know what was going on with me. They told my family that. Fear the worst. She's not getting out of hospital. This is. This is it. We don't know what's going on. We don't know what's wrong. Lots of lumbar punches, steroids, MRI's. Yeah, it was. It was a strange and scary time, I think. Not just losing the capacity to walk and move from my chest down. I was also blind. And when I say it's black, it is black. It is darker than you. You could. I could even describe to you when you're blind. And then over the course of about six weeks from the initial hit of Pneumonitis Optica, I started to get my vision back and see shadow and shadow and shade on shade. And luckily now I have some patience so I can see, but it's very pixelated. I've had become very reliant on other people, so I can't please have some of my own. And when you've been such an independent person throughout your life, to have that independence taken away is. It's savage, really. And it's. It's a massive learning curve. And I know that there's many people out there who have obtained disabilities later in life after being fully abled, are mentally having to deal with that. And it is a rollercoaster of a ride having to go through that.
Peta [00:06:08] And for a lot of us, being in hospital is traumatic enough. Like, I know a lot of disabled people have trauma attached to their hospital stays, and I'm certainly no different in that aspect. But I can't imagine what you are like. Just eat what you just described. I can't imagine how you cope with that. I mean, obviously it's been an ongoing thing for you to have to adjust, but when you think back and if you can't think back, I fully respect that. But if you can think back to that time in the hospital, how did you keep yourself going every day? Did you want to go to sleep so you could travel? Did you daydream in your head, or were you just so upset that you've blocked at that time in your life? Because I have big chunks in my past that have just disappeared because of trauma.
Annabelle [00:07:01] I've actually had to do a lot of work over the last year with regard to the trauma that's happened throughout all my hospital stays that I've had, and I'm actually going back into hospital soon for another operation. And. The trauma that I initially experienced is just the trauma of going into hospital and having to be away from your creature comforts, your loved ones, and dealing with a totally new life and being reliant on the nursing staff to support you. The time when I initially fell ill, I slept a lot, and I was very lucky that both the hospital, as I were saying, were literally on the doorsteps of all my friends and family and therefore I was never without somebody by my side. I always had a visitor. I always had someone with me, supporting me, just being there. And that got me through. And my, my partner Danny, who's now my husband, was literally there every single day with me. He is my rock. And I am so grateful that I have with Danny, my love. Having him there and having my friends and family so close and being able to come and visit, I think really, really did help me and it helped me stay mentally strong to kick back against the doctors and the nurses, saying I was never getting out of hospital and that was going.
Peta [00:08:32] Though for some reason they seem so, and this is very generalised I statement. I have loved ones that are in the medical field and thankfully they're not like this, but generally they seem to. The medical professionals seem to lose their humanity a little bit. Like I don't know what happens in the fact that they want to tell you like the worst case scenario, whereas in reality, to get through, at least from my perspective, I like to look as positively as I possibly can, because in the end, this is my life and I've got to live it to the fullest.
Annabelle [00:09:09] Oh, I absolutely agree with you. And when I initially started to get some of my vision back, the doctors didn't believe me. But like, no, no, that's not going to happen. That can't happen. She won't be getting her vision back. And Danny was like, just do something to try and see if if you can tell whether she has or whether it's a figment of my imagination. So the doctor pretended to hit me and I dodged, and he did it again. He's like, this shouldn't be happening. This is really bizarre. She shouldn't be doing this. I think one of the major troubles was when my bank went back to the spinal cord injury unit, because I'd never actually dealt with somebody who had visual impairment in a wheelchair, and then they just really didn't know how to cope with me. The stay at the hospital in Oxfordshire was was fantastic and they were so supportive, unfortunately. And stay at a hospital in Buckinghamshire is when quite a lot of my trauma actually happened. I got given the wrong drugs. I had to learn all my drugs by touch. Back then. This is not now, but back then it was quite an aggressive stance with all their patients and around hospital posters saying we do not tolerate people shouting at us, being angry with us. And so as soon as you walked in, there was just this negativity and this anger and that was coming from the whole place, not just the patients who were now trying to deal with a new way of life, but it was coming from the nursing staff as well. Whereas as I said, I've got the operation coming up soon and I literally can't wait to get in. I can't wait to work with my surgical team and the team that are going to be supporting me throughout the couple of months that I'm going to be in hospital because I've met them and their stance is totally different. I felt they had my back. They listened. It wasn't. They said what needed to happen and that is what needs to go. It's we, our team and we are all part of a team together and we support one another. So I am very much, very strangely, but very much looking forward to going in. To have this operation to me means a new lease of life for me.
Peta [00:11:38] There's nothing worse than feeling like you're the problem that everybody's trying to solve. It's failing in the world. So I'm very pleased that that has changed for you. Obviously you've gone through so much change in your life, but I want to also talk about your loved ones because you spoke about your husband just before and how important he was for you, in you transitioning into your new life, for lack of a better word, how do you how did you cope with loved ones grief around your disability as well? Because it's such a change for them. And even though I was born with my disability, to this day, if people ever say, oh, I feel so sorry for you, I really get my back up. And I was like.
Annabelle [00:12:23] No, no, I think my last one body type, but it is, isn't it? And you have you have to accept and take on your own emotions, which in itself is a roller coaster and. It's important to do the work for yourself, in that area. But it is important to understand that there will be emotions from others. They're all going to the emotions from your loved ones. Initially, my loved ones were extremely strong. They're still strong now. But we are able to have better conversation now. I am in a stronger, healthier mental state. To ask how they are and we just support one another. Although the story is about you and it's happening to you, it's also happening to all those around you as well.
Peta [00:13:23] I know you're very passionate about meditation and affirmation and journaling. Did you do this before your disability or was this something you developed?
Annabelle [00:13:35] It's always been part of my life, but it was a very small part of my life ever since I was a teenager. But once I fell ill, it became a really prominent part of my life and has really supported me mentally, physically, emotionally, spiritually throughout the past 17 years. And by leaning into meditation and the affirmations, the gratitude. It helped me to understand who I am more. It helped me to like me as a person. And I think if you can't sit with yourself. As a person and love yourself, then it's very difficult for others to do the same for you. It helps me appreciate the smaller things in life, and things can get so dark when you're dealing with a disability. There's days that are just hard and. You can't see the light at the end of the tunnel and you think you're going to break. But you've been there before, and you know you're not going to break because you can get through it. And it's given me the mental strength to go. I can sit in this moment where everything is dark, and I will allow these emotions and allow this time, this fear, this time. So I have to worry. I will give it space and I will give it a voice, but I will also move on from that with the gratitude, with the affirmations, to move into a more positive mindset.
Peta [00:15:13] People with disabilities have to have a lot of internal strength because like particularly for me, who have a lot of, non-disabled people in my life, they're supportive. Of course, they, they're all amazing, but they really don't understand, and they never will, because they're never going to live my life and they're never going to live your life. So in the end, it has to come from ourselves to be okay and to get through. And I can really say that those practices have really enabled that in you just looking at, you know, I could just so tell you're such a confident, comfortable person in your own self. It's lovely.
Annabelle [00:15:52] To. Thank you know, and it's it's important that we all find these practices and and yes like you said your family and friends are wonderfully supportive, as are mine. And they are amazing, but they're not necessarily going to get it. And that in itself is really hard to overcome, is the fact that it's like, you just don't get it. And when I, you know, I can get the green eyed monster, the FOMO can come in, and the jealousy of then leading my life and doing all these wonderful things and climbing mountains, going on hikes, horse riding, this, that and the other that I am not able to do but used to love to do and I think, oh, I'm missing out here and it hurts. And you're never going to understand that heart of that. I could have done that. I could have done that. And I can't do that anymore. If you're if you don't have a disability that you have to struggle with getting up in the morning, you have to struggle with asking for help. You have to. Take away that independence and sometimes that dignity as well. My dignity is gone out the window two years ago. When? Do you have to deal with all of that mentally? Do you know that your friends and family are never going to get it until they walk a minute in your shoes? Or in our case, to a minute in our chairs and wait around the clock.
Peta [00:17:33] It's so true. But I always. And like I'm. You've travelled around the world, so I don't want to make out that this podcast is full of doom and gloom because you have a very, very full life. Who do you feel you are now that you have your disability? Do you feel you're a different person, or do you feel like you're the same person that just have a disability?
Annabelle [00:17:57] When I look back on the person I was then. She was crazy. She was a party girl. She was out for fun. She was a little bit out for herself. She was pretty selfish. In some ways. In some ways she was so loving, caring and giving in some way. She was selfish and ignorant and naive and silly and it was wonderful to have been her. But my disability opened my eyes to so many things and I've learned so much. And I wouldn't be the person I am now. I don't think without my disability and I wouldn't have the relationships, the wonderful, strong relationships that I have now. You. I don't know about myself. I know when I fell ill with my illness, there were friends that couldn't cope and left. And unfortunately, when. Things start to crumble. Do you realise who your friends are? So actually, the people who were there now, I deeply love them. And I give them all my friendship. And I love. And I give my friendship heart. It's being. But just the most wonderful learning experience. And yes, those challenges. Yes, there is darkness. Yes there's negativity. But the positive stuff that's come out of it is has been amazing. And it was one of the simplest things to turn the simplest things. When I initially fellow and then got set up in my wheelchair, I had to have two boulders either side of me to keep me up straight, and I put my head up on my own, sat up and I brushed my teeth on my own. SAT up. It sounds so simple and something so, so many of us take for granted, but I felt like I'd achieved the wow. It was amazing. And I think with a disability comes the most gratitude and the most magic with the smallest of achievements. So you really do appreciate to learn more.
Peta [00:20:15] Is there anything that you'd like to share more on social media about your disabled life? Or do you think there are areas that the disabled community aren't talking enough about?
Annabelle [00:20:28] I think there's some people out there who just share. So much information with regards to this is what I'm doing and then that can make disability look very able. And I think that can sometimes be quite difficult for other people with disabilities. Well, I can't do that and I can't do that too. How are you doing that? And then not necessarily giving the contrast on both sides. So I sometimes think that can be be a bit difficult for people. What needs to be shared more is the everyday life is perhaps the about program. I mean, I've never spoken about bio so much since my disability. It's not something you discussed as an independent person was you discuss your bowels. Now you discuss your bladder, you discuss catheters, you discuss discuss all the things you never once thought you would discuss. And I think that needs to be more of an open conversation as well. So we're all doing this. We're all having to go through this and this is how it works in the end. This is what works for me, what works for you. And having that communication backwards and forwards and being open, honest and supportive with one another and then other people who don't have disabilities read that, go, oh, so you have to deal with all of this pretty much before you get up in the morning, or this is what you have to deal with every day. Keeping that open, honest conversation and being open and honest on social media will well support so many others to know that. They're okay and they've got theirs.
Peta [00:22:14] As always. Thank you for listening to this week's episode. I hope you enjoyed it. If you did, can I encourage you to leave a writing a review on Apple or Spotify? You can always follow me over on Instagram. My handle is at Peter Hook and you can send me an email if you have a question or a future guest to come on the pod. My email addresses. I can't stand podcast AJ Malcolm. Thanks again for listening. And until next week. Have a good one guys. Bye. I would like to respectfully acknowledge the wandering and vulnerable people of the island nation, of which I record the podcast today. And I pay my respects to both elders, past and present, along with and especially to those in the First Nations communities who are disabled themselves.